Being Chronically Ill is not easy. I have been feeling better over the past month or so I feel good about sharing some of the things that go through my head on a daily basis. Things that no one else could understand unless they were in my shoes for a day, a week, or a month. I often wish that it was possible for people to do just that so they could get it. I really do understand that people do not understand but sometimes it is really hard for me and I just want to say shut up or more often just leave me alone. This is when I isolate myself from people. I can try to educate but many people do not listen or care to hear about what I/We live with on a daily basis. I can tell the same person over and over and it is like they just don't listen so it is easier to just live in my own little world with my family, the ones who really understand. They get it because they see it, they live it. They watch me go from doing ok and in a split second having to sit down or lay down because I just get weak or ill. Our life is lived day by day, minute by minute. We just recently started making future plans because I am feeling somewhat better. That being said, this does not mean we will be able to fulfill our plans depending on how I feel that day but we have made them none the less. So here is my Don't list for all of you. I am sure I will be adding to this list as time goes on.
Don't assume I am just like you because I look good. Looking good for me on some days takes quite a while. On other days maybe not so long. When someone tells me I look good I cringe and think to myself, so you are thinking I can't be sick because I look good?
Don't think that when you ask me how I am doing and I say fine, that I am. Fine for me means I am here talking to you and it is sucking the energy out my core. I never gave it a second thought, when I was healthy, as to how much energy your body uses to just talk or listen, really listen to someone.
Don't treat people rudely when you are out in public you never know if they may be dealing with a chronic illness. I maybe the one you cut in front of or pushed out of your way. One wrong step or fall can put me in pain or down for days. Many times when I am shopping I am leaning on the cart so it will hold me up. I may get to the check out and have a horrible time even putting the few items I get on the belt. Be aware of your surrounding. Help someone if you think they are having problems. When I am at that point if someone asked me if they could even load my car I would be thrilled. I hate to always have to wait to shop with Rich. He works very hard and I feel horrible when I have to ask him to do one more thing. He sacrifices so much for me/us already.
Don't just stop over when it is convenient for you. I may be having a hard day and having company is exhausting for me. Call first! Of course family is exempt from this one!
Don't tell me you have a miracle cure for me. I have really terrific doctors who take very good care of me. They have helped to go from a person who could hardly move to a person who can now enjoy her family and others if there is enough energy to do so. My family has become my first priority and if I have energy left you may get me if not I'm sorry. I surely don't need you telling me a vitamin will make me feel better.
If we do make it out to a party please understand I do not have the energy to talk to everyone. It would be much appreciated if you would come up to me and say hi instead of me having to come up to you. It takes a lot of physical energy for me to come to you.
Don't stop inviting me to your get togethers. Just because I couldn't make it the last time or the time before that doesn't mean I can't make it this time. This is sad to me because this does happen. People just kind of give up on you or take it personally when you can't meet with them. It has nothing to do with them. I wish more people could understand this.
Don't assume that if I just get out more I will feel better. I won't! Going out, even for lunch, takes all my energy for the day, energy I may need to cook dinner or do laundry.
Don't assume because I don't work I probably don't do anything. Taking care of myself is a full time job in itself. I am fortunate to watch my grandchildren and they understand when Nana says, "I have to rest." Sometimes kids understand much better than adults. Plus, they love me unconditionally and don't tell me what I need to do. They just say, OK Nana, I love you!"
Don't treat me like you are going to catch what I have if you happen to see me out in public. I need to know you are happy to see me just as much as I am happy to see you. I am not contagious, if I were I wouldn't be out. In the same regard if you are ill please tell me so I can avoid you as all the drugs I take lower my immune system and I cannot fight off illness like you can. A common cold for you can kill me.
Don't assume I don't need you to care. I do. It can be very lonely and scary on the days I am really sick. Love and prayers are what help me through my days.
Don't assume this chronic illness business is only mine. My husband, Children, Grandchildren and Parents all suffer from this. Rich probably the most as he is my primary caregiver. This is the other side of chronic illness people do not talk about. Chronic Illness IS a family affair.
Don't assume that just because I am sick I do not have a good life. I believe everything happens for a reason and for me this is what I have been handed and I do the best I can do with it. I have a very good life and God has been very good to me. He gave me the best people in the world to take care of me and for that I am grateful!
Don't think that I am making any of this up. Why anyone would ever make up being sick is beyond me. I try to avoid doctors at all costs. I have even begun to let some tests I should be having on a yearly basis go because I just don't care anymore. It is another full time job preparing for doctors appointments and stressing about them. It is no fun!
Don't think that I do not think of my own death. I do. I am ready to go. I know many think that is awful to say and if I was healthy I would probably think the same thing. I'm not healthy so to me it will be such a freeing to me to get out of this body and be in heaven!
Don't compare your health issues to mine. If you ask how I am doing and I say I a tired don't say, "Oh I know I am tired too." You have no idea what I am talking about when I say tired or fatigued. My fatigue is a fatigue that radiates from the bones. It is very hard to explain. Think of the flu and times it by ten. It is even worse that that. Or imagine holding a 25 weight in both hands over your head for a long time until you can no longer hold them up. The tired you feel after doing that is how I feel all the time. Right now I really need to clean my house. I have good intentions. My head is saying I will do it all. Then, I will start. I will sweep the floor and have to rest. Believe me, my head wants to do it all but now my body controls my day. It is heartbreaking for me. I use to be wonder woman now I feel worthless because I can hardly hold my head up for too long without resting it on the chair or with my hand.
Don't call my house before 9am at the earliest! Or after 9pm. Sleep for me is huge! If I do not get 9-10 hours a night my symptoms are worse. I appreciate no calls more than you could ever imagine. I am not going to answer anyways because by the time I try to fumble for the phone and it falls out of my hand the call gets lost anyways. Plus at this point my brain is trying to process making my body be able to move and it cannot handle a conversation anyways.
The last don't: Don't think that I am writing any of this for pity or to be mean. It is just my life. I have found I am the only one who can take control of it. No one else is going to enforce all of these don'ts for me. I must. That is why I share them with you. I hope they not only help you when it comes to me but help you if you are dealing with chronic illness. Or they help you if you know of someone living with chronic illness. If they do not apply to you now, take note because someday they probably will.
May God Bless You and Your Day!